Cicily's Adventures

Monday, July 24, 2017

I wanted to put a shout out there to all the amazing people who have done something for our family while Cicily was sick and after she died.

We have been the humble recipients of dinners, foot massages, homemade pillows, flowers, paintings, sculptures, and more. Each and every gift and gesture of love and compassion has meant so much to us and truly lifted our heavy hearts. Thank you, thank you to all who have blessed our lives these past months.

We have most especially appreciated every one of you who has participated in the power of prayer on our behalf. We cannot deny the immense power and comfort that your prayers have blessed us with. There is no earthly reason that accounts for being filled with grief at not being able to make Cicily smile; but still being able to find joy in life. I know the joy we've found is possible because of so many prayers and the Holy Ghost comforting our hearts. And so many friends mourning with us and sending us love and positive thoughts. It has been truly amazing to feel of the very real power of comfort from prayer and love.

Monday, July 17, 2017

We may sound a bit harsh or nonchalant when we talk about Cicily dying in our family. There are reasons for this I'd like to explain.
A couple weeks after Cis died I was talking to Sophie and happened to say in the conversation "the night Cicily passed away". Sophie looked at me with her perturbed/serious look and said, "you can just say died Mom. Cicily's not past. She just died is all." I had to agree with Sophie's logic. Cicily dying is something we've known would happen and something we've always been very open about in our family. To Sophie dying is just another part of life. A new chapter. It's doesn't mean someone is "past" or "away" so to speak, it just means they're in another life where unfortunately we don't get to hang out. So while it may not sound as polite or graceful to say "died", in our family that's what we say.
A friend of ours left this on my FB wall. I thought it perfectly captures our family's feelings. It's by Henry Scott Holland .

We love talking about Cicily and love it when friends talk with us about her. Especially when it's easy, with "no forced air of solemnity or sorrow". It was a difficult task when she had recently died. We had to have a family discussion about the more we talk about Cicily in every day conversation, the more normal it will feel.

So while we all miss her a ridiculous amount, and I in particular cry daily about it, we still like to talk about her and think about her as we always have.

Friday, June 9, 2017

We got the recording of Cicily's funeral yesterday. It's just over an hour long. An hour very well spent! It's perfectly Cicily - upbeat, happy and inspiring. I know you're doubting because it's a funeral. But it was important for us to honor Cicily in the way that she lived with laughter and love. Enjoy!

Friday, May 12, 2017

When Cicily was born she stayed in the NICU at the hospital for a few weeks. While she was there I greatly disliked having a nurse tell me how best to comfort her (I've since silently thanked said nurse as her tip was helpful for Cicily's whole life) and I refused to wear gloves to hold her. Cicily was MY baby and I was her Mom. While I greatly appreciated the medical care she was getting, I did not appreciate that she needed care from anyone besides me. While I was sitting by her bedside one day I had the distinct, undeniable feeling of the words, "she's not just yours". Feeling these words did not make me recoil with deep annoyance like they should have, they came with a peace and understanding. Heavenly Father was letting me know from the very beginning that Cicily was on this earth to be shared with others. I was not the only woman in her life that would care for her, love her and learn from her.
So tonight I would like to acknowledge, pay tribute and show appreciation for all the people in Cicily's life who she came to be here with. Our family has great love for all the nurses who cared for Cicily in our home. We especially appreciate her besties (the long-termers) Kelly, Michelle, Ashli and Joy. You all enriched Cicily's life in unique ways. It was by divine design that each of you came into Cicily's life.
Tamara has been Cicily's school nurse for the past 8 years. She started school with Cicily in preschool and continued to care for her, teach her, love her, and advocate for her the next 8 years. We consider Tamara to be a 3rd grandma to Cicily. And she has promised not to stop calling me as she has done every day Cicily went to school to give me a recap so I knew what to talk to Cicily about.
We love Cicily's teachers beginning when Cicily was a baby and JuLee (and her family) came into our lives to teach us sign language. Then Cis went to preschool and had a wonderful teacher and aides. Then Kindergarten and 1st grade where she had a master teacher who could whip out accomodations like most of us blink. 3rd grade where Cicily had a teacher so impressed with how well Cicily learned and worked hard to add on to her knowledge. Then 4th grade where Cicily had not only an amazingly loving and inclusive teacher, but a whole school family. A school family where kids from other classes said hi to her in the halls instead of staring, where she had a gaggle of girls hanging out with her and talking with her at recess, where she had friends who loved her because they understood and appreciated her. Where she had a sped teacher who loved her and helped her play pranks and a principal who gave her a hard time about socks and cruised her around campus in a swing.
We thank the therapists who worked with Cicily and helped keep her strong and active. Cicily loves so many of you for making hard work fun.
We respect and honor the doctors, assistants, staff, social workers, nurses, and hospital workers whose expertise and caring truly gave Cicily the best chances for a great life. I really will miss waiting in your rooms and throwing around medical jargon with you.
We love our church congregation family who have learned with Cicily and been taught by her smile. And who have allowed us to serve and and to be served and cared for. We will forever adore you for giving us the gift of time with Cicily this past month. Charity never faileth.
I have love for those strangers who smiled at Cicily or gave her extra attention.
And for all who have read this blog over the years for allowing me to share my Cicily with the world. It may be a small audience, but it truly has covered the world. And that makes my heart happy to know that Cicily's influence and love have been felt and shared and made the world a little brighter.

I realized after telling some dear friends about Cicily's last day on earth, that I never shared it here. It was the kind of day Cicily loved. We went over to her Grandma DeEtte and Grandpa Courtney's house (We put ours up on the market to sell that day, I know worst timing ever, but things have just fallen into place even in the midst of the worst timing ever.) Cousins were in town and Grandpa spent a couple hours being the tickle monster and making the house ring with little laughter because he knew Cicily loved it. And it kept the mood nice and light and loving, something we all appreciated. In the early afternoon I asked Chris to help me take Cicily upstairs to hang out in Grandma and Grandpa's bedroom where we could have more privacy as her breaths were more and more shallow and less and less frequent (not that a breath every 10-15 seconds is frequent). In the next few hours, Cicily got to spend time holding her best cousin Lily's hand, listening to Maya practice a history presentation, and snuggling with family. After spending an entire week at home, it was just the kind of idyllic day Cicily loved. When it was dinnertime Chris went downstairs to help Maya and Sophie get dinner with everyone. Grandma listened to Cicily's heart (grandmas were the breath counters all week :) ) and could barely hear it. They were able to have a sweet moment and then Grandma went to get some food for me. (What a beautiful thing to have a grandma who is caring for her daughter who is caring for her daughter.) After Grandma left, Cicily didn't really breath for a while. I ran to ask Chris to come upstairs. He came and I looked at him and we both cried and hugged Cis. Then she took a big breath and we had to laugh at her little joke. But, we knew it was time and Chris went to ask Maya and Sophie to come upstairs. Fortunately they were very obedient and hurried upstairs. They were able to say bye to their Cis and then she took one more breath.
For the next several minutes we hugged and kissed our Cicily's dear body and cried (and yes in some cases, even farted) together. Then we invited all the cousins and aunts and uncles and Grandma Sue and Grandpa Norm (who's had the BEST perspective on having his granddaughter die on his birthday!) and nurse Tamara to come in and love and hug and cry. It was heartwrenching, and grief filled and sad, but also full of love and concern and charity.

Monday, May 8, 2017

So I'm going through pictures of Cicily's life to have a video made. It is making my heart very happy to see this smiling face living life. It's a cliche country song to say she lived like she was dying, but when you have so many surgeries and find out you have a terminal condition, you focus a lot on living and living good. Cicily really did live life and have every opportunity through her struggles to really enjoy her life.

So I thought you all who loved her and have followed her adventures, might like a random sampling of Cicily's really good 10 years in a few pictures. Enjoy!

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Cicily at 8 years old

About Cicily

Cicily has degenerative hypomyelination (leukodystrophy) - no white matter coating her brain, which is terminal. For Cicily, this means she has limited motor control and "shakey" movements. It does not affect Cicily's cognitive abilities, as she communicates and learns at a standard level for her age.

Cicily also has Treacher Collins Syndrome. For Cicily this basically means she was born with a cleft palate, small lower jaw, small ears, and no ear canals.

Cis is such a tough girl though, and she's so easy going. She handles all of her difficulties so well. She's certainly up for her challenges! She continues to be a medical mystery and a joyful girl.